TSH 4.95: Hi, Im on 125 levo and have been for... - Thyroid UK

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TSH 4.95

tom210 profile image
13 Replies

Hi, Im on 125 levo and have been for about 4/5 years, feeling very tired and depressed, went to GP had a blood test and results were TSH 4.95 [0.27-4.2] GP said the results were satisactory and no further action was to be taken. Any advice would be apreciated

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tom210
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13 Replies
Akebah profile image
Akebah

I felt like death at around that level of TSH. Nice guidelines say to continue raising dose when symptomatic - even if within range. The range is just that and you need to find your optimal level. You need to remind your doctor of this.

tom210 profile image
tom210 in reply toAkebah

Hello Akebah, thanks for that I will go back to GP although I am dreading it

Akebah profile image
Akebah

Also check ferritin (mine was bottom of range last September - I did not supplement but have ensured liver once a week). Also vitamin d and b12 levels.

fuchsia-pink profile image
fuchsia-pink

Once you're on levo, your dose should be increased until TSH is always less than 2 (probably less than 1) both free T4 and free T3 are in the top third or higher of the lab range AND you feel properly well. Hopefully SlowDragon will pop up in a bit and send you the relevant link from the guidelines.

For the sound of it, the GP is only testing TSH, which is wholly inadequate once you are on levo: you need to see what your thyroid hormones are doing as well. Please see if the GP will do FULL testing: TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. You need a blood test before 9am (when TSH is highest) and a gap of 24 hours from your last dose of levo. I've had some success with y GP by saying that these are the tests recommended by Thyroid UK. But if s/he can't or won't, can you treat yourself to private testing?

Post the results (and related lab ranges) afterwards [in a new post and the lovely people here will help you to understand them. Good luck

tattybogle profile image
tattybogle

Your TSH is far too high for someone on thyroid hormone treatment ...Your Levo dose should be increased to lower...... it many people don't feel well until it's around 1 . (and some need it slightly lower than that)

SEE GP AGAIN and ask for an increase of 25mcg

SHOW THEM THIS recommendation to GP's from GPOnline (written by cardiologist and endocrinologist)

"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L"

gponline.com/endocrinology-...

(article is copied pasted into this post if you can't access it on GPonline link~ healthunlocked.com/thyroidu...

ALSO :

sps.nhs.uk/wp-content/uploa... RMOC-Liothyronine-guidance-

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the article from Thyroid UK email print it and highlight question 6 to show your doctor



 please email Dionne at

tukadmin@thyroiduk.org

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

TSH (thyroid stimulating hormone ) is a signal from the pituitary gland to the thyroid asking for more (or less) thyroid hormone to be made (T4 / T3)

A high number means "make more please" , a low number like 0 means " we've got enough now" If thyroid is unable to respond with more T4/3 then we get diagnosed hypo and it then becomes GP's job to respond to high TSH by increasing T4 using Levo.... your GP is failing to do this . (especially since its over the reference range, even if he was not aware of the need for optimal TSH to be closer to 1 .. he should at least be getting it into the reference range... there's no excuse for saying 4,95 is OK if you told him you don't feel well.

The NHS's own guidelines for treating hypothyroidism clearly tell him to get TSH 'into range'

nice.org.uk/guidance/ng145 / cks.nice.org.uk/topics/hypo...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It makes sense of why you feel awful now once you see this graph of most frequent TSH Levels found in healthy people..( healthy peoples TSH is most commonly around 1 . but once on Levo people sometimes need it slightly under 1 to feel best.)

healthunlocked.com/thyroidu... tsh-levels-in-healthy-people-with-no-known-thyroid-disease

tattybogle profile image
tattybogle in reply totattybogle

EDIT .. first sentence above should say "Your TSH is far too high for someone on thyroid hormone treatment ...Your Levo dose should be increased to lower your TSH......many people don't feel well until it's around 1 . (and some need it slightly lower than that) "

(I'm not risking editing it ,in case all the links disappear ... we've got a gremlin that looses links when you edit posts )

SlowDragon profile image
SlowDragonAdministrator

Looking at your forum name…..are you male?

Approx how much do you weigh in kilo

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more ….some less

healthunlocked.com/thyroidu...

With TSH over 2 you definitely need 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks later

Do you always get same brand levothyroxine at each prescription

Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Can be more convenient and possibly more effective to take levothyroxine at bedtime

ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

ESSENTIAL to also test vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking, if any

tom210 profile image
tom210 in reply toSlowDragon

Hello Slow Dragon, yes I am a man and I am 80kg. I take 125 levo and am on 1000 Caleciferol, I also take Hydroxycloroqunine, Duluxotine, Naproxen, Mebeverine, Omeperazole. I will ask the GP for an increase in Levo. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply totom210

IBS, bloating etc when hypothyroid is almost ALWAYS due to LOW stomach acid

Omeprazole is a PPI to treat HIGH stomach acid.

Low and high stomach acid have virtually identical symptoms, but VERY DIFFERENT treatment

When hypothyroid we frequently have low vitamin levels, due to low stomach acid causing poor nutrient absorption and low vitamin levels as direct result

Any PPI tends to lower vitamin levels even further

How long have you been on Omeprazole

Should be a short term 6-8 weeks max

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi

Omeprazole will lower vitamin levels even further

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

SlowDragon profile image
SlowDragonAdministrator in reply totom210

Levothyroxine is an EXTREMELY fussy medication and MUST be taken on its own, no other medications or supplements at same time or within 2 hours

Many/most like vitamin D, omeprazole and calcium must be minimum 4 hours away from levothyroxine

Levothyroxine must always be taken on empty stomach and then nothing apart from water for at least an hour after

Taking levothyroxine at bedtime can be more convenient and possibly more effective

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

Have you had coeliac blood test done

Or are you already on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

Batty1 profile image
Batty1

My TSH is almost at 2 and I suffer with dementia like symptoms and lack energy or appetite…. I can’t imagine having TSH of almost 5… get a new doctor.

tom210 profile image
tom210 in reply toBatty1

Hello Batty, I know what you mean with the dementia like symptoms, it' so difficult to find a doctor that understands what this feels like, crippling fatigue, depression, mood swings off the scale. I am on my third GP in about 5 years and none of them up to know how to treat Hypothyroidism seriously, I have been refused an alternative to Levothyroxine, I have been refused an appointment with an Endocrinologist, I have been accused of not taking my medication when I take it with a religious zeal. Basically Gp's say blood results are in range or near range and no further action to be taken regardless of how I'm feeling, it's heartbreaking knowing this will never end

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